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Home of The Saturday Evening PostTue, 03 Mar 2015 17:31:20 +0000en-UShourly1http://wordpress.org/?v=4.1.1Out of the Darkhttp://www.saturdayeveningpost.com/2012/10/02/in-the-magazine/people-and-places/dark.html
http://www.saturdayeveningpost.com/2012/10/02/in-the-magazine/people-and-places/dark.html#commentsTue, 02 Oct 2012 11:00:31 +0000http://www.saturdayeveningpost.com/?p=67547Virginia Jacko lost her vision at the peak of her career, then turned her blindness into a stunning asset.

Buddies for life: President and CEO of Miami Lighthouse, Virginia Jacko, with her guide dog Tracker. Photo by Scherley Busch.

Virginia Jacko was going blind. She knew it, but not everyone else did. Since the mid-1990s, her vision had been steadily deteriorating. Though capable of seeing people and objects in front of her, she might not recognize a person standing at her side. Finally, in 1998, then in her 50s, Virginia was diagnosed with retinitis pigmentosa, an irreversible disease affecting about 1 in 4,000 people in the United States. The disease attacks the cells controlling night vision and peripheral vision first. But in advanced cases, such as Virginia’s, it robs central vision, eventually leading to blindness.

So it was with trepidation that Virginia arrived at the office of the incoming president of Purdue University for an initial meeting with her new boss. She wanted to assure the president that she could still fulfill her responsibilities as the financial advisor to the president and provost.

For years now, she’d found ways to adapt her personal and professional life to an increasingly narrow visual world. She scouted out meeting sites ahead of time. She’d stopped driving, relying on taxicabs if she needed to get somewhere quickly. She prepared for meetings at night, her face close to the monitor so she could read words on the screen and memorize data on Excel spreadsheets. “I never got depressed or felt sorry for myself,” says Virginia. “Negative energy is just a waste of time.”

But that fateful morning in late 2000, as she reached the office of the president’s assistant, her heart sunk. The president had ordered new furniture that completely changed the layout of the room. Virginia realized she would not be able to navigate the space without help. So, thinking fast, she pretended to be running late for the meeting and waited for the president to step away from his office. When he did, she slipped in, guided by the assistant, and sat down on the couch. When he returned, she merely had to stand up to greet him.

The plan was a success, but the experience was a loud wake-up call that Virginia couldn’t ignore. She needed to learn to live as a blind person if she was going to succeed in a sighted person’s world. Her vision was getting to be too much of a problem to conceal. After the meeting, she called her husband Bob, a professor of civil engineering at the same university. She told him she needed to take a three-month medical leave. She would study at a vision rehabilitation facility.

One of her three children, Julie, urged her to check out the Miami Lighthouse for the Blind and Visually Impaired. Virginia and Bob owned a condominium in Miami, so she would have a place to stay. Once there, Virginia immersed herself in the world of the blind, honing skills she once took for granted, such as baking oatmeal cookies and sewing buttons on clothes. She soaked up everything she could learn about computer programs for the blind, including programs that convert text to speech. After the three-month program, Virginia felt a renewed sense of confidence. “I learned that a blind person can do anything a sighted person does. They just have to learn to do things differently,” she says.

At the end of her medical leave, Virginia was at a crossroads. She could return to her job at Purdue and continue to advise the president and provost on financial affairs. Or she could continue her efforts to regain her mobility by enrolling in a one-month, 24/7 intensive training program with a guide dog. She chose the latter.

By then, not only was Virginia completely blind but for the first time in her life, she was stepping into the future without a clear career path. Yet she was at peace with her decision. “I had changed. Walking out the doors of Miami Lighthouse as a graduate of the program, I realized that my passion was helping the blind,” she says.

Virginia’s husband Bob spent three months with her in Miami while she completed the program but, as a tenured professor, he had to return to Purdue for the new school year. Virginia would stay in Miami with her new guide dog Tracker, immersing herself in work at the Miami Lighthouse. She began as a volunteer, but such was her financial experience—and drive—that she soon became treasurer and a member of the board.

Not everything went smoothly for Virginia as she adapted to her new life. Once, while out on a stroll along a coastal walkway, Tracker stepped aside to avoid colliding with a woman pushing a stroller. The sudden move knocked Virginia off the breaker wall and she plummeted into the sea. Virginia calmly treaded water until someone lowered a ladder, allowing her to climb back up to solid ground.
Another time, she attempted to sit down for lunch at a restaurant in a major department store, only to be told she couldn’t bring Tracker into the restaurant. Not one to be easily thwarted, she stood her ground and seated herself with her guide dog at a table. That day, she called the company’s headquarters and advised that the incident would result in a public relations fiasco unless changes were made. In no time, the chain changed its policy, and it now provides Americans with Disabilities Act (ADA) compliance training for all employees.

In early 2005, the president and CEO of Miami Lighthouse left unexpectedly for personal reasons. The chairman asked Virginia to serve as president and CEO on an interim basis until a permanent replacement could be found. Following a nationwide search, the board selected Virginia, making her the first blind president and CEO in Miami Lighthouse’s 81-year history.

Virginia wasted no time in growing the organization by offering innovative programming as she deepened relationships within the philanthropic community. “When I took over in 2005, we had one grant and today we have more than 30 active grant awards,” she says.

Thanks to her outreach efforts, revenue has nearly tripled, allowing the organization to vastly increase the scope of its services. Today, Miami Lighthouse teaches rehabilitation skills to people of all ages—from blind babies to seniors with low vision—allowing them greater mobility and self-reliance. Miami Lighthouse has become a center of excellence in vision rehabilitation because of its innovative programs, such as sound engineering and mobile eye care for low-income schoolchildren. All told, under Virginia’s leadership, the organization has increased the number of people it serves fourteen-fold to about 10,000 annually.

All of this on a budget that Virginia watches like a hawk. For five consecutive years, Miami Lighthouse has received the highest rating from Charity Navigator, America’s largest independent charity evaluator of financial health and accountability.

Virginia’s disability has never slowed her down. “Virginia is such a determined person. Having a deep faith; supportive family; and positive, can-do attitude are at the core of her success,” says Doug Eadie, co-author of Virginia’s autobiography, The Blind Visionary.

“I am so blessed,” Virginia says today. Her blindness, she feels, was a gift that allowed her to find a new mission and purpose in life. “We transform people’s lives at Miami Lighthouse every day. I lost my vision, and I found my passion.”

To frame the discussion, however, let’s first take a quick look at the eye, specifically its outmost covering, the cornea, which provides two-thirds of the eye’s focusing power.

How well you see depends on the shape and curve of your cornea. A normal cornea is smoothly rounded with even curves from side to side and top to bottom. Vision problems—or refractive errors—affecting about 120 million people in the United States develop when the cornea becomes too curved (nearsightedness), too flat (farsightedness), or curves more in one direction than in another like the back of a spoon (astigmatism).

Eyeglasses and contacts correct refractive errors, but LASIK surgery is an increasingly popular option for convenience and comfort.

So, here’s the rub.

During LASIK, the surgeon creates a flap in the eye’s cornea and then uses a laser to reshape it for good vision correction, explains Dr. Kreuger. In a relatively few cases, the cornea weakens after surgery (a condition called ectasia) and loses its ability to maintain the desired shape. As a result, vision blurs and gradually deteriorates.

We asked Dr. Krueger to discuss the latest information about the symptoms and risks for post-LASIK ectasia, and new advances in what doctors can do when it occurs.

Post: What are the symptoms of post-LASIK ectasia?

Dr. Krueger: Patients with ectasia lose visual acuity—some immediately, others months or even years after the surgery. Images become distorted as the cornea loses its rounded shape, and most find they need new lenses or progressive glasses as those changes occur.

Post: How common is it?

Dr. Krueger: Post-LASIK ectasia parallels keratoconus, a naturally occurring condition in which, although no surgery has taken place, the structural integrity of the cornea is not maintained and begins to bulge in certain ways that distort vision. Probably one out of 2,000 people in the population have keratoconus.

LASIK-induced ectasia, while rare, is presumed to be more prevalent in people with subclinical keratoconus. In other words, patients with previously unrecognized corneal weakening may develop a more prominent problem after LASIK.

Post: Who is most at risk?

The most common risk factor is an irregularity on the corneal topography map, a tool we utilize to help screen out individuals who are not suitable candidates for LASIK surgery. As mentioned, having an irregular or steep cornea may be a telltale sign of subclinical keratoconus that may contribute to post-operative ectasia.

Surgeons also look very carefully at a risk score system that is based on published data collected over many years from large groups of patients who developed post-LASIK ectasia. In developing this system, investigators assigned a certain amount of risk to various factors. For example, corneal thickness less than A amount might have B amount of risk toward ectasia. A topography map showing C amount of irregularity may contribute D amount of risk. Being young presents more risk because the cornea gets a little stiffer with age. Then, they developed a way to tabulate an overall score from the list of individual risks.

While the scoring system is published and based on actual data, it has been criticized. Many patients who fit or exceed that score have done perfectly fine and never developed ectasia. But LASIK surgeons do consider this score before doing surgery in order to avoid this phenomenon.

Post: Are topography maps standard of care in LASIK surgery?

Dr. Kreuger: Yes. But they aren’t definitive. Surgeons have to consider other factors.

Post: Does ectasia usually show up in both eyes?

Dr. Kreuger: It can initially develop in one eye, but the potential could exist in both eyes.

Post: What can be done to help people with post-LASIK ectasia?

Dr. Kreuger: The primary treatment is contact lenses to provide a new, smooth shape for the eye to look through.

What has come along for keratoconus, and is showing benefit for post-LASIK ectasia, is a procedure called crosslinking. Collagen crosslinking is a photochemical method of applying vitamin B-2 (riboflavin) drops on the eye and then shining an ultraviolet light that activates the riboflavin to help create little links in the cornea that make it stronger. It is being used in countries around the world, and FDA trials are underway in the United States.

Post: So this is an experimental procedure at this point?

Dr. Kreuger: It’s an investigational procedure in the United States. But it has been investigated in other countries and has shown good success.

Post: Are corneal transplants an option?

Dr. Kreuger: In advanced cases, yes. A transplant will replace the irregular and weak cornea with a stronger one. Then, you can correct it. But that’s a pretty advanced procedure. Corneal transplants may also be considered when crosslinking is not a good option or has been tried and is not fully correcting the problem.

Post: What advice would you offer to people considering LASIK?

Dr. Kreuger: I would suggest several things: 1) Go to more than one place to have your eyes evaluated so that you can get a sense of what doctors are saying at one place versus another. 2) Do some homework so you can ask lots of questions. 3) Make sure you are going to a place that has a stellar reputation for eye care in general. 4) Find an experienced doctor who has good judgment and the patient’s best interests at heart. 5) Ultimately, find the latest technology. Sophisticated imaging devices are now available to help determine which eyes have any risk for keratoconus or ectasia. Hopefully, there will be even newer and better tools in the future.